Summary

Workstream 4 (WS4) will compare the experiences of people with dementia and their carers who pay for their own care (self-funders), with those whose care is paid for by the local council (non-self-funders). It aims to answer the questions:

1. What are self-funders’ experiences of figuring out the care available and arranging care, after a diagnosis of dementia?
2. How are the experiences of self-funders different from the experiences of people funded by councils, over time?
3. How are self-funders’ decisions affected by their experiences of services and the people who work there?
4. What are the backgrounds of self-funders in terms of ethnicity, income, age, sexuality? Do these affect decision-making and experiences of care and support?
5. Which social science theories (i.e. ideas about how society works) help us to understand the experiences of self-funders?

WS4 will answer these questions using both quantitative (numbers or numerical data) and qualitative (data that is not numerical) methods. We will compare the differences in costs and quality of life between self-funders and people who are council-funded using quantitative analyses. This means that we will be able to see if any differences between the two groups are likely to be due to chance or if something else is at play.   

For the qualitative side of this research we will interview people with dementia and their carers to find out:

• About their experiences with different people including service providers, councils, family, friends and carers.
• Where they are finding information, for example on the internet, and what information they need.
• About their experiences of choice and control over their lives, especially when changing between different services or health and social care.